What Lies Beneath

The school year has begun for Cesare.  Medicaid, bless their souls, continues to fund one to one nursing for Cesare.  I advertised on Craigslist and very quickly found not one but two wonderful nurses.  I explained to both that their role would be to medically supervise Ces at home and when accompanying him to college to help him organize himself and stay focused.  Cesare has enrolled in just one class: Biology.  He is finishing his first week of school today.  Megan accompanies him to school and reports that in class he is engaged, with his hand in the air.  It takes a  team of two conducting a small summit each morning, however, to help him to organize his belongings before heading out the door.


It stops me in my tracks, at times, to consider the possibility that underneath the pervasive effects of Cesare's many drugs, could conceivably be an alert and highly functioning individual waiting patiently to get out.
If you are not yet acquainted, allow me to introduce you to Cesare's battalion of drugs:

• Onfi (clobazam): "Onfi causes drowsiness and sedation. Onfi may slow thinking and impair motor skills."

• Felbatol (felbamate): "Felbamate should be used with extreme caution, because it carries a significant risk of liver and bone marrow failure, which can be fatal."

• Fycompa (perampanel): "Side effects include dizziness, sleepiness, fatigue, irritability, nausea, weight gain, and problems maintaining balance. Serious psychiatric and behavioral reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported. Patients should be monitored for such reactions, as well as changes in mood, behaviors."

If you are the parent of a child with epilepsy, or any other drug responsive disorder or disease you will understand when I say these horrible drugs are our friends.  They have, after multiple brain surgeries and alternative therapies, given him a semblance of a life.  How he functions at all under the weight of those side effects is mind boggling.  

As the fall marches on, we will delve deeper into the possibility of the RNS implant.  If he is a candidate he wants to proceed.  We've stepped many times before into the land of 'could this be the one?'.  I'm not ready to go there quite yet.  But the specter of full time college, a career, independence...wow.  That young man is in there, I just know it.  However, we'll happily take him any way we can get him.  

The Dive

It has been almost 48 hours since my son Griffin walked out the front door of our home and through the door of his new home, albeit a small one...about 12' x 12' for two college freshman.  I fully anticipated the grief I am feeling.  That doesn't make it easier.  I object to the dismissive notion of an "empty nest" which reduces me to a caretaker who has lost my job.  Instead, I am grieving for the young man I have come to know in these last few years.  I am grieving his friendship and the way he fills a room.  I am grieving the way he balances a home that is too often filled with illness and urgency or too much quiet.

(Griff, Cesare)

I've been thinking back to when my twins were about five years old and they learned to swim at our town pool.  We spent most of our summer days there, until it became clear that Cesare's occasional attacks of fear and anxiety were not that at all: he was developing epilepsy. The freedom to swim about and search for colorful toys on the bottom of the pool were no longer  options for him.   Summers filled me with dread knowing that Cesare would demand the same freedom his brother had and that I would have to curb that freedom.  I met with the pool staff, outfitted Ces in neon swim trunks and had him wear a distinctive rainbow bracelet so that all of the young lifeguards could spot him and help me keep an eye on him.  But his freedom was, and forever would be, curbed.

Griffin and Cesare loved the diving board.  I did too.  I'm not a great swimmer, but I can swan dive!  What a feeling that is...arms stretched out to embrace the sky, back arched and head held high before setting for the plunge: arms come together, head down and laser focus on the entry.  I've spent all of Griffin's life trying to prepare him for the dive.  Embrace the world, hold your head high...reach.   I don't know that I've been the best coach.  I've been distracted and infinitely fallible.

Perhaps it was foolish, but I could not deny Cesare the same opportunity to learn to dive...or simply to run freely to the end of the board and jump into the cold, blue void.  I would cajole the lifeguards into allowing me to tread in the dive area to await his plunge.  I'd hold my breath and zero in on Cesare's face, looking for any sign of a seizure creeping up.  He would shriek with delight and hit the water still smiling.  I'm still in the deep end with Cesare.  Watching, waiting, protecting.  I hope for the day that his entry into the world doesn't have me treading a few feet away.  

48 hours ago, Griffin's toes left the board and he's in the arc.  It's too late for coaching now.  I need to give him room, keep breathing and witness the entry.  He's allowed a flop, I've had so many.  He need only get in line again and try to perfect his approach.  It is his challenge now.  

Stabs in the Dark

For as long as we have been a family, we have either worked in or gone to school.  Summer is our  time to regroup, travel and laze around before the fall comes.  The fall is our January 1, the start of the new year.  It is a comfortable routine: new spiral notebooks,  new teachers for the kids and new students and sometimes new administrators for Tom and I.  My friend describes the back to school procession and the ensuing hubbub as being shot out of a cannon and landing at the end of June.  And that is how it has been for us.  Vetting the school scene for Cesare: assertively but not too assertively spelling out Cesare's IEP for his new teachers and therapists, reminding bus drivers he seizes if the bus is too hot on those waning days of summer and making sure that the school nurse has every conceivable form signed and delivered.    For Griffin, I have been the gnat in his ear reminding him to plan ahead..record homework somewhere and moderate his game time at home to squeeze in a little studying time.  It is like being violently launched into space, but not the unknown.

This fall, however,  is all uncharted territory.  Now high school graduates, my boys are stepping out.  Griffin leaves for college in eleven days and counting.  Is he ready? Is any freshman ready?  I cannot be his organizer and time keeper anymore.  He'll land on his feet, but I won't be there to see it.

Cesare lives utterly in the now, lucky fellow.  He is not a planner like his mom.  But transition to the next phase of his life requires some planning. Pulling teeth, I tell you.  I thought we had a plan for Ces to take a couple of courses at the Community College and work in the grant-funded-job coach-assisted factory job he was ushered into this summer for a couple of days a week.  Cesare seemed to be ok with that.  I suggested he consider a two year course to become certified as a  Veterinary Technician.  That sounded just fine a couple of months ago, but as we're getting closer Ces has been asking, "why college?".   Why indeed.  Why anything?  I feel as though I'm swimming in a soup..a chowder really...dodging chunky obstacles in my way.  After all of the sometimes questionable guidance we received during Cesare's entire compulsory education, suddenly it is very, very quiet.  No CSE meetings.  No clear direction or assistance.

I tell Cesare that factory work, while diverting and producing a small paycheck seems kind of cool it will feel decidedly uncool and quite boring after a number of months.  I tell him that school provides not just stimulation for his brain, but provides a chance at social connections and recreation.  He looks at me blankly.  He's very happy sitting home and playing his XBOX, thank you.  But, I tell him,  there is more to life.  These existential conversations have come up before, and have largely fell flat I believe.  I am hoping that there will come a day that through the fog of meds and the emotional burden of "having a disability" to say nothing of the stress of knowing your disorder can creep up and utterly debilitate you without warning, Cesare will consider the future.  I hope that he will have the capacity to ask the bigger questions about his life:  what does he want? and, what does he want to leave behind?  Until then, I fill the uncomfortable role of trying to give him some direction and motivation.  I wish I knew in what direction to point him.